Saturday, August 22, 2009

More Great News

Mayo Clinic Visit Thursday, August 20, 2009, end of Cycle 19

Pomalidomide works! At the end of the 19th 28-day cycle on the Pomalidomide / Dexamethasone Phase II trial my M-Spike is 0.8 g/dL, as low as it has ever been, IgG is 979 mg/dL, below 1000 for the first time ever, and neuropathy caused by the pomalidomide (CC-4047) is easily tolerated and has not increased in two months. No big breakthrough this month, just more evidence of a continuously stable or declining tumor burden. I'll take it!

Related links:

      My Myeloma     A discussion of my myeloma, not very technical.
My Treatment History Not technical.
My Test Charts Graphic displays of several key test results over time.
My Test Result Table Best with a wide browser window. Very "technical."

Here are a few of the latest test results:

Test May 28   Jun 25   Jul 23   Aug 20   Remarks
M-spike g/dL 0.9 0.9 0.8 0.8 Best tumor measure
IgG mg/dL 1030 1010 1010 979 Variation is normal
L FLC mg/dL 2.60 2.63 1.95 2.07 L Free light chains
Calcium mg/dL 10.0 9.6 9.7 10.0 Below 10.2 is best
Creat mg/dL 1.0 1.0 1.1 1.0 Kidney, lower is better
HGB g/dL 14.4 14.0 14.8 14.5 Hemoglobin, normal
RBC M/uL 4.06 3.93 4.13 4.01 Red cell count, low
WBC K/uL 4.0 5.6 3.9 3.7 White cells, normal


Discussion with Dr KDS:
  • My neuropathy has not become worse in the last two or three months. It reached a level where the balls and heels of both feet are partially numb, along with one thumb, and then it stopped advancing. It's quite livable, barely noticeable most of the time.
  • I've lost four pounds in the past two months. Maybe. If so, it would be a very good thing.
  • I have the usual litany of dexamethasone (DEX) complaints:
    • Thin, aged-looking skin, easily bruised,
    • Slow healing of wounds,
    • Slow running - muscles wasted, and
    • A new complaint: Sleep is hard to come by the night after "DEX day."
  • I have been taking 8 mg of DEX once per week, and that will be reduced to 4 mg from now forward, by agreement of Dr L, Dr KDS, and myself.
  • The next lower level of DEX on this Phase II Pomalidomide trial, after 4 mg, is NONE. I like the sound of that. Say it again: NO DEX!
  • I've been on DEX for 18 months now. If I were NOT on a trial, Dr L and Dr KDS would probably have taken me off DEX by now, she said, because of its many negative side effects. The trial does not allow a participant to go back on DEX, however, so they haven't moved me off quite as fast.
  • Soon, though, I hope. Life is wonderful, considering the alternative, and I've had far fewer symptoms than most from myeloma and its treatments, but assuming that the numbers will remain stable I'd love to get some running speed back. What a treat that would be.
  • I asked what additional long-term DEX effects I should watch for. Her response was "myopathy," which basically means weakening of muscles. In this case I think we're talking about skeletal muscles, and it's certainly happening already, as demonstrated by the loss of running speed.
  • My blood pressure was excellent this morning, 123/66, but pulse rate was only 39, even though I had just walked in to the exam room and sat down. She seemed unconcerned - I have a history of heart rates in the 40's because of the running.
  • How low is too low? I suspect that my heart rate goes considerably lower when I'm dropping off to sleep. Seems like it does.
  • We both believe the low HR to be an effect of the pomalidomide, not the DEX. It seems to reduce my HR at the high end, too, limiting my top running speed in shorter, high-energy races. Going off DEX wouldn't help that.
  • Most people who have been on the trial for this long have had their pomalidomide regimen reduced to 21 out of each 28 days, rather than every day. In most cases this is done because the person's neutrophil count or white-blood-cell count (WBC) has dropped below acceptable threshholds. I still take it every day.
  • My neutrophils are 1.45 K/uL, about as low as we have seen them, but still well above the threshhold. Ditto my WBC. They may be a little lower than usual simply because I haven't recently been exposed to a threat.
  • Or maybe not. Platelets are low too, at 167 K/uL, though they also have been as low in the past. All three of these numbers could be depressed somewhat by the pomalidomide. That does happen to other people, and time will tell.
For this last cycle I took the pomalidomide in the morning, as often as I remembered to do it then, before eating anything at all. I thought that it might have the most impact if taken on an empty stomach. If so, it didn't seem to make a very big difference. Nevertheless, I liked that and will continue doing it that way for the next cycle. DEX will be taken with Sunday dinner, as it was during this cycle.

Yummy breakfast
Breakfast after a 5-mile run. Oatmeal below, most things are organic including the globs of yogurt.


  1. Don-
    Good news on many fronts!

    1) this clinical trial is lowering your counts- excellent.
    2) low dex even at 8mg per week. If you can go to 4 mg or, god forbid, NONE, then I say awesome.
    3) PN? If you can run at all I am envious- enjoy at any speed.


  2. Don, thanks for the details from the pomalidomide trial. It is enlightening.

    Having been a serious runner, I am impressed with your condition under the circumstances of the myeloma and its treatments. Obviously, your physical regimen and diet play a role in your overall health.